Tuesday, May 3, 2011

CCSVI As Punk Rock

This was the battle cry of a generation of young rock ‘n rollers, who, in the late 1970s, donned black leather jackets, cut their hair short and spiky, picked up instruments they barely knew how to play, and declared war on a bloated music industry establishment. Sick of having music shoved down their throats by corporations that had become self-reverential and complacent, they decided to take matters into their own hands, and by doing so changed the course of rock 'n roll history.

After the incredibly vibrant and creative 1960s, which saw rock 'n roll evolve from a teenybopper fad into a multifaceted and sometimes profound art form, by the mid-1970s music seemed to be suffering from a particularly brutal hangover. Dominated by bands that had become behemoths, and musicians who had come to view themselves as royalty, rock 'n roll had changed from the soul of a youthful revolution to the sound of cash registers opening and closing. Sure, there were exceptions, but they were few and far between, followed by pockets of ardent fans but stuck in relative obscurity. Record companies barely supported the likes of David Bowie, Iggy Pop, The New York Dolls, and T Rex, preferring instead to throw their money and marketing might behind safer, less challenging acts, but in doing so stripped the passion out of an art form that had been born of it.

The Multiple Sclerosis establishment found itself in a vaguely similar position in 2010. Prior to the late 1980s, decade after decade of investigation had been spent making absolutely no headway against the disease, despite the best efforts of researchers. These were the dark ages, a gloomy time for patients diagnosed with MS, during which the disease was considered a "diagnose and adios" malady. There was precious little doctors could do for their desperate patients except wish them well. Researchers primarily concentrated on looking for an infectious cause to the disease, with a few suggesting that the vascular system may somehow be implicated. Despite the occasional report of a breakthrough, none ever panned out, and patients and their doctors were left with little option other than to simply watch the disease take its insidious toll.

In the 1980s, things changed. The theory of autoimmunity, which posited that for reasons unknown a patient's own immune system goes on a cannibalistic attack, destroying a body's own central nervous system tissues and resulting in the telltale signs of MS, took hold and started to grow roots. By the late 80s a substance known as beta interferon, thought to somehow modulate aberrant immune systems, was in full clinical trials on MS patients. These trials proved successful, even if only moderately so. A statistically significant percentage of patients with relapsing remitting disease were shown to suffer less relapses while on beta interferon drugs, and their MRIs displayed fewer areas of disease activity. It was hoped that this would translate into the delay or even cessation of disability progression, but at the very least these new drugs did increase the quality of life for some of the patients taking them, and physicians finally had a weapon in the fight against the disease.

As the autoimmune theory became more entrenched, MS research started focusing almost exclusively on finding better and more powerful methods of suppressing the human immune system. This led to the creation of new classes of drugs which suppress various parts of the very intricate and not fully understood immune system, substances which show more efficacy than the interferons in treating the symptoms of MS, but also carry with them the specter of serious and sometimes deadly side effects. While these drugs, too, have had a profound effect on the quality of life of some of the MS patients taking them, none address the still unknown root cause, or causes, of the disease. Problematically (for patients hoping for a cure, at least), MS drugs have become financial blockbusters, transforming multiple sclerosis into an $8 billion a year industry, a financial windfall which has further focused the attention of researchers on tinkering with the immune system rather than finding out just what causes it to suddenly turn upon the body’s own cells.

Back in the late 70s, restless kids fed up with the pablum being pumped out by the music industry (appropriately dubbed "corporate rock") started to create their own music. Though their output may have been technically less than masterful, the raw passion, emotion, and soul poured out by bands such as The Sex Pistols, The Clash, and The Ramones more than made up for their musical deficiencies. Combined with sarcasm, swagger, and a loud disdain for the mainstream (one of the seminal albums of the time, by The Dead Boys, was appropriately entitled "Young, Loud, and Snotty"), the brashness of these young punks was startling, and set the mainstream back on its heels.

Their popularity primarily still confined to the musical underground, the antics, in-your-face behavior, and outrageous attire of the early punks soon grabbed the attention of the media, who at first treated them with derision, as did the corporate giants the punks were attacking. Initially shrugged off as troublesome outcasts, many pundits predicted their quick demise. Instead, punk thrived and only gained in popularity, spawning a vibrant counterculture whose ethos spread from music into the visual and cinematic arts. Due to the popularity of a new communications entity, MTV, punk music and fashion spread quickly from the cities to the suburbs, and soon the major labels were scrambling to sign and market their own punk bands, now labeled under the more palatable moniker of "New Wave".

Late in the first decade of the 21st century, the Multiple Sclerosis establishment likewise found itself confronted with a radical new idea, called CCSVI. This hypothesis, first put forth by the Italian vascular surgeon Dr. Paolo Zamboni, states that blockages in the veins that drain the central nervous system either cause or contribute to the neurodegenerative disease we know as multiple sclerosis. Furthermore, Dr. Zamboni's initial trials showed that opening these blockages, using a relatively simple and minimally invasive procedure, seemed to dramatically relieve the symptoms of MS, suggesting an entire new avenue of investigation into the disease. At first, Dr. Zamboni's findings got very little attention, outside of a small group of patients keenly debating the relative merits and demerits of the idea on a small Internet MS forum. Soon enough, though, the Canadian media picked up on the story, and all hell broke loose.

Rather than approach the idea with open-minded scientific curiosity, the MS establishment initially tried to dismiss the idea of CCSVI as absurd, some going so far as to label it a "hoax". MS patients reacted with indignant fury, the pent-up frustrations of years of being treated with hyper expensive and nominally effective treatments that do nothing to address the essence of what's making them sick exploding like Krakatoa, creating a medical tsunami the likes of which had never before been seen. Carried along by new social networking tools such as Internet patient forums, blogs, and Facebook, the MS establishment could do nothing to harness the growing CCSVI movement, a patient driven initiative that forced the issue as patients took matters into their own hands and began traveling abroad in pursuit of CCSVI treatment. In the United States, Interventional Radiologists, the doctors who specialize in the catheter procedures used to treat CCSVI, soon started taking notice, treating MS patients for the blockages that were indeed been found in their veins. Though far from universally successful, anecdotal evidence does seem to indicate that treating CCSVI does, at the very least, relieve some of the symptoms experienced by some MS patients.

As the 1980s evolved, punk evolved with it. While mainstream rock acts still commanded a lion's share of attention, new bands, deeply influenced by the original punk rockers, burst onto the scene, and gained in popularity. Slowly, what once seemed cacophonous, outrageous, and even obscene began to be absorbed into the mainstream, and the lines that separated rock 'n roll genres began to blur. Though the revolutionary vitality felt by those in the center of the storm in the late 70s and early 80s was largely gone, and punk rock's fangs had been filed down, by 1993 punk reigned supreme as it flooded the airwaves and music stores under the new banner of "Grunge", a development that the leather jacketed, safety pinned, and spiky haired kids 15 years before could never have even imagined. These days, the children of the original punks listen to modern music that would not exist if it weren't for long gone bands that they've barely heard of, largely unaware of the history behind the music.

The future of CCSVI is likewise beyond prediction. There is much still to be learned, both about the condition itself, and how best to treat it. The significance of CCSVI in the big picture of MS still needs to be determined. Despite the hopes of the most fervent CCSVI supporters that it will prove to be THE cause of MS, and the doubts of the naysayers who claim it has no significance at all, the truth will likely fall somewhere in between, and could very well vary from patient to patient. For some, CCSVI may play a dominant role in their disease, for others it may play no part at all. Current treatment protocols need to be standardized and perfected, as we currently see too many problems with restenosis, clotting, and the occlusion of treated veins, but eventually these issues too will be worked out.

Perhaps what's most important, though, is the tremendous upsurge in patient self-advocacy, education, and empowerment that has been the product of the intensity of the CCSVI debate, which has quite possibly changed forever the dynamic of the patient-doctor relationship. No longer will we as patients be dictated to, but partnered with. Knowledge that was once the province of an anointed few is now open to the masses, a development with repercussions that may take many years to resolve. New generations of doctors will undoubtedly be more open to this changing dynamic than the old guard, but Pandora's box has been opened, and for a while, it seems that anarchy will have its day. Punk rock and CCSVI, Viva La Revolucion!

25 comments:

What a great article, great writing! Love the analogy. One thing about MS sufferers that I've noticed...we seem to accomplish more than mere mortals even WITH the bindings of MS. Just saying...you are a perfect example. Kudos! Rock on!

I know now why my favourite time of my life was the 80 and 90s! It was the Anarchist in me and truly seeing it evolve November 21, 2009. I now liken myself as John Simon Ritchie aka Sid Vicious! Good article Marc.

Marc, Profound analogy about how change occurs. In the case of emerging MS cures, however, too much research money is tied into the autoimmune theory that has really brought no "management" (how I hate that term!) or cause/cure for MS.I do not need to tell anyone who has MS, that time is of the essence.

So, how do we get from the old thinking to suppressed theories of virus, CCSVI and stem cell? More importantly, how do we get the money?And, the bottom line is, until the MSers continue to raise Hell for different research, nothing will change. Anarchy it is!!!!

You drew me in. At first I had planned to read as I ate my breakfast, but soon I had pushed my Cheerios aside and pulled my laptop closer! We just maybe getting closer! I got soggy cereal yet I'm still hopeful!

Kazmo, Great Blog...If we as MS'er can do to the industry what Iggy Pop did to american Idol the other night, the world will never be the same and the cure will be within our midst...http://www.youtube.com/watch?v=phBpFVviZBA

Marc: What a great post! I'm included in your description on clotting and occlusion of treated veins---"issues that need to be worked out." Lately I haven't been able to participate in life much due to those problems and really appreciate reading your thoughts on CCSVI (and punk rock)!

I have an MS long time. I have seen a lot of cures come and go. I have been watching this now for over a year. I was very excited about it at first. But over a year later I am not seeing sufficient proof to make me a believer. At this point I am beginning to believe this is another MS Money grab.I am sorry to be a wet blanket of time only available science is being turned into sour notes. I see many people going all over the world to get this treatment, but I have not seen any real proof in the end. All I can say is be very careful.

liking the analogy but i wonder whether as vein issues were mentioned when MS was invented/discovered in the 1850s-ish you could say those at the vanguard of CCSVI development are more like the New Romantics of healthcare provision in their harking back to a previous age? "ridicule is nothing to be scared of" indeed. AdamAnt Prince Charming http://www.dailymotion.com/video/x1ws2s_adam-ant-prince-charming_music) Either way we need more people both providers and users to think about healthcare in many different ways

Before 1958 ulcers were considered caused by strong foods and stress. Then an old greek doctor found an antibiotic cure and cured thousands of patients. The medical establishment didn't listen and deemed the findings of this doctor as nonsense.Twentyfour years thereafter two other doctors found out the same and they got the Nobelprice.CCSVI is deemed as nonsense by the medical establishment and where will this lead?

I saw my neurologist today and I asked them the status of the ccsvi procedure in their minds. They said from the beginning they did not believe that due to the large amount of patients interested in it they began to work with Stanford University. Stanford did a 100 patient trial. Two of the first 100 died due to stents moving on into the heart. The other 98 one year later have no significant improvement of any kind. That is what I want to see his results down the road. This has become a money grab without proof. We are also thirsty to find a cure blocks are better sense of truth.

This may seem trite but after hearing and reading a great deal of different sources of speculation, I feel that us MS'ers only truly have at our mercy, at this time, the food we eat and what we drink as our front line defence to reduce the effects of this "gift". And, let us not forget the significance of how we mentally handle our wide range of conflicts. Funny enough, there’s endless material on diet cures for MS. We don't want to leave anyone out when sharing our disability income with the 'liberators' of our condition.Anyway, who can't resist eating bland food at extortionate prices.Now off to deal with my depression.Have a great day!

The post, however brought me back to 1977, seeing The Jam at the Whiskey A Go Go in Hollywood, one night with friends. My first Punk gig. Gawd, that was LOUD!! My ears rang for 3 days afterwards!! Danced my ass off, though! Fun memories!!

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...